Ulcerative Colitis Blog

Although most people with IBD are diagnosed after 20 years of age, the incidence of IBD in children and adolescents appears to be increasing. It is estimated that of the 1 million individuals living with IBD in the US, approximately 100,000 are under the age of 18. Furthermore, about 25% of people will develop their first symptoms in adolescence before coming to diagnosis. There are a variety of aspects of IBD in the young that differ from that in adults:

Relationship to age
The peak onset of IBD in children is typically during adolescence between 12-15 years. It can, however, develop as early as the first year of life. An interesting observation that has been made in several studies is that UC and indeterminate colitis tend to predominate in the youngest patients (< 5 years of age). As children approach adolescence, Crohn's disease becomes more common.

Growth and puberty
Chronic disease during adolescence can impact the attainment of one's genetic height potential and delay pubertal development. Numerous studies have demonstrated that children with IBD are at risk of growth and pubertal problems, albeit more so for Crohn's than UC. Growth and pubertal delay result from a combination of inflammation in the body, malnutrition from poor gut absorption/ lack of appetite, and steroid side effects. Generally once the disease process is controlled, growth and pubertal development resume as normal.

Social and emotional development
Adolescence is a key time of both social and emotional development. Teens are faced with the tasks of developing autonomy and self-image. Coping with a chronic illness like IBD during this period in life can be especially stressful. It is a time when children most want to fit in with their peers, but their health problems may make them feel like they are worlds apart from others. They may feel uncomfortable talking about what they are going though even with family or close friends. Parents and physicians caring for teens with IBD need to pay particular attention for signs suggesting certain children could need additional emotional support

Future risk for colon cancer
The risk of colon cancer in UC is believed to be related to duration of disease, extent of disease through the colon, associated primary sclerosing cholangitis (PSC), as well as chronic inflammation. Thus, the longer one has the disease and the more active and extensive it is, the greater the risk of developing colon cancer. This is an important consideration for people diagnosed at a young age. For UC patients without PSC, it is recommended that routine colonoscopies are performed starting 8 years after diagnosis. Colonoscopies are then performed every 1-3 years depending on associated risks for the patient. Because there is a greater risk of colon cancer in patients with UC and PSC, colonoscopies are performed at diagnosis and then yearly in such individuals.

Christine wrote into the blog with concerns pertaining to her young grandchild with colitis. The peak onset of IBD in children typically occurs between 10-15 years of age. Children with the onset of IBD at ages less than 5-8 years fall into a unique category of patients. Studies of these very young IBD patients (< 5-8 yrs) have shown that there is a predominance of colonic involvement of disease. Furthermore, distinguishing between Crohn's disease and UC can be particularly challenging in this age group. Fifteen to 30% are diagnosed with "indeterminate colitis," which is a form of IBD carrying features of both Crohn's and UC. Symptoms of UC in the very young are similar to those of older children and adults, consisting of diarrhea, blood in the stool, and abdominal pain. Just as in older patients, the disease course in the very young varies considerably. The unpredictable nature of IBD is perhaps one of the most frustrating aspects of the condition for both patients and physicians. The treatment goals are to induce remission of disease and find an acceptable maintenance agent to keep disease quiescent and minimize untoward side effects. Unfortunately, there is a paucity of data regarding response to therapy in this age group. Studies of colectomy rates in this age group have suggested that 5-20% will require removal of the colon in the first few years of disease.

Christine also commented on her own feelings of frustration and helplessness with respect to her grandchild's illness. When children have a chronic medical condition, it affects the entire family. Many parents describe feeling a loss of control over life when their child falls ill. As it is human nature to want to care for and protect young children, there is a strong emotional investment from the entire family unit. Christine notes in her email family disgareement regarding the course of her loved one's therapy. Finding ways to discuss these issues rationally in a non-confrontational manner is key. In these situations, bonding together in a cohesive, supportive manner is in the best interest in the child and family members.